Chris' journey to end his multiple sclerosis by undergoing a hematopoietic stem cell transplantation at the Ottawa General Hosptial. This blog will show his entire treatment and all the highs and lows along the way.

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Tuesday, December 13, 2011

Today marks one year since Chris recieved his new stem cells (what we consider his new birthday). To mark the occassion, Chris spent the day at the hospital yesterday having a series of tests completed for the research study.

These were the same tests that Chris had back in June. This included math tests, eye tests, walking tests, and of course a full neurological exam.

It was nothing but great news. First, they were able to tell us that Chris' MRI shows no signs of new disease activity. If you compare this to the previous year, where Chris had a huge decline, this is unbelievable. They aren't able to determine yet if Chris has had a reduction in lesions. The MRS scan that Chris had in July will be used to track the size of Chris' lesions, and unfortunately Chris will not have his second scan until next July.

However, while we don't have a scan that proves that Chris is improving, Chris has seen huge improvements in his EDSS Score.

The Expanded Disability Status Scale (EDSS) is a rating system used to classify the level of disability for people with multiple sclerosis. The scale looks at key functional systems that are affected by multiple sclerosis.
The functional systems are:

Pyramidal (ability to walk)

Cerebellar (coordination)

Brain stem (speech and swallowing)

Sensory (touch and pain)

Bowel and bladder functions

Visual

Mental

Other (includes any other neurological findings due to MS)

The scale is from 0-10 with a 0 indicating a normal neurological exam, a 9.5 indicating a person being totally helpless and bedridden and unable to communicate effectively or eat and swallow, and 10 indicating death due to multiple sclerosis.

Prior to this procedure, a neurologist determined that Chris was a 4.0 on the EDSS scale. This meant that the MS was affecting several different functional systems with major and minor disabilities. The person is fully ambulatory without aid, and is up and about most of the day (12 hours) despite relatively severe disability. He or she is able to walk 500 meters without aid or rest.

We found out yesterday that the neurologist who saw Chris in June determined he was a 2.5 at that time. This meant that there was mild disability in one functional system or minimal disability in two functional systems.

We also discovered that the neurologist who saw Chris yesterday determined that Chris is now a 2.0 on the EDSS scale. This means they determined that Chris only has minimal disability in one functional system.

That is such a big change in just one year. We were ecstatic to hear about Chris' improvement.

Chris also met with Dr. Atkins and he decided that Chris no longer needed to be on any of his medications.This will mark the first time since 2007 that Chris will not be on any medications. We can throw out his sharps container because we know Chris will never need to take another injection for his MS again. We will finally have room in our medicine cabinet for normal drugs, like Advil, instead of polysyllabic drugs, like famciclovir and zopiclone.

We are now busy getting ready for Christmas. It will be a lot different from last year for many reasons. Mainly, we are so thankful to be able to spend this holiday season with friends and family instead of nurses and doctors (no matter how great those nurses and doctors were!) As hard as it was spending Christmas in the hospital last year, we are so grateful that Chris had the opportunity to have this procedure.

Friday, November 11, 2011

On October 19 -22 Chris' doctors attended the European and Americas Committees for Treatment and Research in Multiple Sclerosis and presented their results from the Canadian Multiple Sclerosis Bone Marrow Transplant study.

While Chris is not included in the official study, he underwent the exact same treatment, so it was really interesting to see the results.

We won't be getting Chris' results until December, so we are using this good news to tide us over until then.

I have included the official abstract that they presented. I have also added my comments in bold. My comments are based on my understanding, so there may be some errors.

M.S. Freedman, H.L. Atkins, M.J. Bowman on behalf of the Canadian MS/BMT Study Group

Background & Objectives: Immunoablation followed by autologous stem cell transplant (ASCT) is being studied as a potential treatment for MS to establish if a long-lasting MS progression free response can be induced for patients with active and progressive disease who are predicted to have a poor prognosis.

Method:The Canadian MS/BMT trial is a non-randomized (i.e. everyone knows what treatment they are getting) phase II trial of intensive chemotherapy and CD34 selected ASCT in 24 patients (this does not include Chris as he wasn't formally part of the trial) considered at high risk of progression with aggressive MS who failed >1 year of standard treatment and EDSS >3 and <6 (EDSS is the scale used to evaluate the level of disability in MS patients. Chris was about a 3 or 3.5 before his transplant)

Patients underwent stem cell mobilization following high dose cyclophosphamide (CTX) and G-CSF (this was the stem cell collection stage that involved cyclophosphamide and neupogen injections and then the removal of Chris' excess stem cells). Immunoablation with CTX, anti-thymocyte globulin (ATG) and adjusted-dose busulphan was followed by infusion of an ASCT graft depleted of immune cells (this is when they blasted Chris with busulphan, cyclophosphamide, and ATG to destroy his immune system and then reintroduced his old stem cells minus the T cell.)

Results: The first transplant occurred in October 2001 and the 24th transplant was completed in December 2009 with a median follow-up of 62 months.

Most patients developed expected organ toxicities and febrile neutropenia but these were generally mild and transient. Serious toxicity developed in 2 patients receiving the highest dose of busulphan leading to fatal liver necrosis in one.

After 1,571 patient-months of follow-up- not a single patient has experienced any further signs of inflammatory disease manifesting as relapses or new MRI lesions. (this is huge! no more relapses!)

- 16/24 patients have stabilized or improved in their level of disability as measured by their EDSS,

- 7 patients have experienced ongoing progression of disabilities.(this means that while they have not had any relapses, the disabilities that they already had prior to treatment have gotten worse. This supports the idea that earlier intervention when the patient still has relapse-remitting MS has the best results)

Conclusions: The results to date demonstrate that high intensity immunosuppression with ASCT is a viable treatment option for patients with very poor prognosis and can change the natural history of aggressive MS.

Monday, October 3, 2011

Chris at the top of the Duomo in Florence. Did we mention
that it was 462 steps to the top?

We celebrated Chris' 9 month transplant anniversary in style. To celebrate our first year wedding anniversary (September 18), we headed to Italy and are pleased to report the incredible changes we noticed in Chris' condition.

Prior to his transplant, Chris had a really hard time walking long distances, whether he was having a relapse or not. It was almost impossible for him in hot weather.

Italy definitely posed a challenge. Anyone who has been to Italy knows that to see all of the sites requires a lot of walking and a lot of stairs. And of course, there was a heat wave in Italy when we went and it was 34 degrees everyday.

But throughout our entire trip Chris had no problem walking, climbing and sometimes breaking into a jog (when he accidentally left our camera at the restaurant!).

The first thing we noticed was the lack of Chris' "floppy foot." (In case you hadn't figured, that is not a real medical term). It is caused by muscle weakness and tightening in Chris' left leg and the term "floppy foot" comes from the loud sound his foot makes when it flops on the ground. The sound is usually my first indication that Chris is having walking difficulty (because Chris never wants to admit it) and unfortunately it causes him to have really bad knee and hip pain.

Over the years we have both become accustomed to this noise when walking and it wasn't until a few days into the trip that we realized that we never heard it, not even once. We even had days where we walked upwards of 20 km and climbed 800 stairs in 30 degree weather and Chris never once had to rest or felt any discomfort.

Even if you compare this to a few months ago when we were in Montreal (see last blog post), this is a huge difference. In Montreal, Chris found that the heat made it harder for him to walk and he did need to take a break because his "floppy foot" had kicked in and it was causing pain in his hip.

So throughout the trip we kept on trying to do things that Chris would have never been able to do before his transplant. It was a great vacation.

After coming back from Italy, we decided to head to the gym to burn off all of the pasta we ate and Chris decided to go on a treadmill for the first time in 5 years.

He isn't close to running marathons (yet!), but he was able to run for 15-30 second intervals at a pretty high pace. A year ago at this time, Chris couldn't even force his body to run.

We have also received Chris schedule for his research study. On December 4, Chris will have his 1 year MRI and then we will get to review it, along with Chris' previous MRIs, with Chris' neurologist on December 12.

We are really excited to see the difference in his MRI. With all of the changes that we are seeing, we know that there has to be a visible change in the lesions on Chris' brain. We are just curious to see how different his MRI will be from last year.

For us, the question is not "Did this procedure work?" its "How well did this procedure work?" I am hoping the Chris wins most improved.

Friday, July 22, 2011

On Monday, Chris went to Montreal as part of the research study to have a Magnetic resonance spectroscopy (MRS) scan.

These scan are very similar to an MRI scan, however, they are able to evaluate the severity of MS, establish a prognosis, follow disease evolution and most importantly, evaluate the effectiveness of drug and treatment interventions.

Chris will have this scan, in addition to two MRIs, each year to monitor his progress.

We had travelled to Montreal on Sunday, so that I could do some shopping and Chris, who had never visited Montreal, could see some of the sights. And of course, because it was a weekend and we didn't even think to pack our contact numbers for the hospital, something weird had to happen to Chris.

Earlier in the week, Chris had started to get really itchy dry skin. He works outside most days and is awful for remembering sun screen, so neither of us thought anything of this. By Friday, he was covered in small, extremely itchy hives, all over his body. We assumed it was maybe an allergic reaction to something.

Two days on Benadryl and train ride to Montreal later and the hives were bigger, the itching was more intense and Chris was a pretty miserable guy. In addition, his skin became so sensitive that anytime anyone touched him he would break out into goose bumps.

Unfortunately, we ended up having to call everyone in the Ottawa hospital before we were able to get some advice, which provided little reassurance: see a doctor immediately. So, Chris ended up having to spend two and a half hours at the walk-in clinic to find out that they had no idea what was wrong with him.

Chris finally made it back to the Ottawa hospital to see Dr. Atkins. There was a concern that he might have chicken pox (since he would have lost his immunity to this due to his transplant), so the nurses and doctors had to be extremely cautious. The likely suspect is that Chris has conveniently developed an allergy to one of his medications. So now he has been taken off all medications and he will be reintroduced to them slowly to determine the culprit.

The irony of this all is the treatment plan for Chris' hives. When Chris had the transplant, he celebrated that fact that he would never have to take another Rebif injection or take steroids whenever he had a relapse. To try and combat the reaction that he had from his transplant medication, Chris now needs to take steroids for the next week.

In terms of improvement, Chris was able to walk approximately 10 km in extremely hot weather in Montreal, with only one break (to have world famous smoked meat sandwiches). Last year at this time, he wasn't able to walk 2km without being in pain from his leg and needing a break, and at the MS walk in May, he needed to have a break on the 5km walk.

Monday, June 13, 2011

Happy 6 Month Birthday, Chris!
It has now been six months since Chris received his new stem cells. It's really hard to believe that it was that long ago.

How did he celebrate? By spending the day at the hospital being poked and prodded of course! (However, he can't really complain, because he did sign up to be part of the research study).

Today ended up being a pretty long day. We arrived at the hospital bright and early, so that Chris could go over the consent forms and ask questions about the study.

Next, he had a "Visual Evoke Potentials' test, which measures the time it takes for nerves to respond to stimulation. This test was at least entertaining (well, for me) as they stuck electrodes to Chris' head and had him stare at a red dot on a computer screen while the background was moving. There was a student there learning about the test, so I ended up getting a bit of a tutorial too! Chris wasn't allowed to listen or talk, so this test probably wasn't as entertaining for him.

After this, I got to hang out in the waiting room while Chris did a speed walking test, distance test, a peg tests (it is exactly how it sounds, Chris had to put pegs in holes) and then some math and cognitive tests. He tested me on some of the questions afterwards and I swear I would fail.

One of the tests was called a PASAT test, which assesses auditory information processing speed and flexibility, as well as calculation ability (it also sounds evil). The examiner will call out a number every 3 or 2 seconds and the patient must add each new digit to the one immediately prior to it.

For example the examiner would call out: 3 then 4 and then you would respond 7, then the examiner would call out 8 and you would need to remember the last number was 4 and call out 12. They repeat this 60 times.

Next, Chris has to do blood work (a lot of blood work, about 20 tubes) and a bunch of eye charts. He also had an Optical Coherence Tomography (OCT) test that measures the thickness of the nerve fibres in the retina of the eye. In order to do this test, Chris needed to have his eyes dilated, which also provided me with a lot of entertainment. It also meant that Chris needed to wear sunglasses for four hours afterwards and wasn't able to see anything upclose. Originally, he had scheduled three meetings after his hospital visit today, but he found out the hard way that he is pretty much out of commission for the day. I ended up needing to drive him around and dial his phone for him so he could cancel all of his meetings.

Finally, Chris had two neurological exams. One exam was from an unbiased neurologist, who had never met Chris and did not know his history, and the other was with Dr. Freedman, who has evaluated Chris prior to the transplant. The reason for the unbiased neurologist is so that they don't know what to look for and can give a patient an EDSS score without knowing what score you had before.

We had a great experience when we met with Dr. Freedman as he already noticed a difference in Chris! Chris had an MRI after his transplant when he was still in the hospital, so he was able to compare this MRI to an MRI he had a year ago. He was able to show us parts on the scan where the lesions had shrunk. They were not drastically smaller, but the MRI was just under 6 months ago. Who knows what the lesions could look like now?

The best part was when he tested Chris' legs. Last year, when he was testing Chris' leg strength, Dr. Freedman was able to overpower Chris' left leg and push it to the ground. He had marked it down in his notes that Chris had moderate muscle weakness in his left leg. Today, he wasn't even able to tell the difference between Chris' two legs and had to check his notes to remember which leg was weaker. He seemed genuinely shocked that Chris had moderate muscle weakness in his leg before and only six months after his transplant, there didn't seem to be any difference.

We have tried to be really cautious in talking about Chris' improvement (mainly because we didn't want to jinx it), but he really does seem to be doing a lot better.

Thursday, May 26, 2011

As we mentioned previously on this blog, Chris and I decided to participate in the Ottawa MS Walk this year. We feel a huge amount of gratitude to the MS Society, who funded the stem cell transplant trial, as well as the research study that Chris is now participating in.

We also feel a huge amount of gratitude to our friends and family that signed up to join our MS Walk team,Team Glazier, and generously donated. In total, we raised approximately $6,500.

At the walk, I was interviewed by CTV News about Chris' experience (they had read our blog!). Now some people claim they saw me getting emotional, but I still stand by the fact that I was cool and calm.

While the walk was such a great day, Chris did have some difficulty walking the 5 km. Chris finds that especially in the cold his muscles in his left leg seem to contract and it puts a lot of pressure on his hip. For the last 1 km Chris was definitely in a lot of discomfort, but he pushed through and finished the walk. Chris has been doing so well since the procedure, we sometimes forget that it is not an instant fix.

Finally, we have received Chris' schedule for the MS Research Clinic. Chris will be spending the morning at the clinic on June 13 (exactly 6 months following his transplant). He will also be getting an MRI on June 17. This means we will have a much better idea on how this procedure has affected his MS.

Monday, May 2, 2011

Last Tuesday, we went to his last transplant appointment. Chris is recovering so well that he has been moved to the MS clinic and will be monitored by Dr. Atkins. His blood work came back much better this month and were all within the "normal range" for a transplant patient.

Next, on the weekend Chris went and had his IVIG transfusion. Unfortunately, I came down with a really bad flu (Chris was taking care of me this time!), so Chris had to go to the appointment alone. The good news is even though he was around me all weekend, he hasn't yet shown any signs of feeling sick. This new immune system he has seems to be immune to my germs.

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Chris today vs. Chris in January. This would have been the difference
Dr. Atkins would have seen today.

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Finally, today Chris had his first appointment with Dr. Atkins and the nurse co-ordinator with the MS clinic. Dr. Atkins had not seen Chris since he was an out-patient in January and when he walked in the door he was really surprised with how great Chris looked. If you look at the pictures it is a pretty huge difference. We went over Chris' progress to date and it really is great to talk about how far Chris has come in such a short time period. He really is back to feeling how he did before the transplant.

We also learned about a post-transplant study that Chris will start taking part in. In 2010, the Multiple Sclerosis Society of Canada funded a research grant for "Long Term Outcomes Following Immunoablative Therapy and Autologous Stem Cell Transplant for Poor Prognosis MS." This study will follow any MS patients that have undergone a transplant to see if this transplant stops the progression of MS in the long term.

To date, all of the participants in the study have not progressed. Also, they want to see if any of the participants have improved EDSS scores. This is the system that is used to determine the level of disability with MS patients. This means that starting in June Chris will go in for a number of tests and an MRI to track his MS. The test includes a timed walking test, a math test, a vision test, a peg test (you need to place plastic pegs in holes) and, of course blood tests!

While Chris has never had a formal EDSS evaluation, but his neurologist did say he was about a 3.5 on a scale of 10. To give perspective on what that number means, a person with a 5 on scale is able to walk 200 meters without aid or rest, a person with a 7 is completely restricted to a wheelchair , a person with a 9 is completely restricted to a bed, but is able to eat and talk.

There are people that have undergone the transplant that have improved substantially on the EDSS scale, sometimes going all the way down to 0.5, which means while there are still signs on the MRI scan there are no disabilities present.

We will now be using the blog to update you on Chris' progress, so hopefully the next time we blog in June, we will be able to tell you if Chris is improving!

Tuesday, March 29, 2011

A lot has changed over the last month, especially in terms of Chris' health.
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Since I am his wife I might be biased, but I think
Chris is looking pretty good! Look at that hair!

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After having such a positive appointment last month, Chris went back to work on March 7 (less than three months after his transplant). Since his doctor recommended that he take a graduated approach, Chris worked three days that week, four the following week and then worked a full week last week. Really, looking back, we figure that Chris could have just gone back full-time. He has never really felt that tired (no more than usual after a work day) and has been able to jump right back into things.

A lot of his clients (Chris works in engineering) didn't know that he had been on a leave of absence. Since the majority of Chris' construction projects take place in the spring and summer, it is not uncommon for Chris not to meet with anyone during the winter. On his first week back he met with one of his main clients and they commented on his lack of hair by asking if Chris had lost a bet. I am assuming this because they had no idea what Chris had been through and thought his buzz cut had been a personal choice. The protective wife in me, however, would like to give them a hard time for being so insensitive. I think he looks pretty cute.

Chris is still working out, but has slowed it down a bit since his knee started to hurt him. He was up to doing 80 minutes on the elliptical, but is only doing weights until his knee is back to normal. The knee that hurts is, of course, his left knee (the leg that was affected by his MS).

On Sunday, Chris went in for his monthly IVIG treatment and since his regular BMT appointment was today, they ended up doing some blood work, so that we would have his results for his appointment.

Despite feeling better, Chris' bloodwork through us for a loop. We had already been told that they were going to discharge Chris from the BMT program and send him to the MS clinic. However, when they went to check his bloodwork the whole computer screen was full of red numbers. All of Chris' counts were MUCH lower:

White blood cells: 2.1 (normal 4.3 -10.8)
Platelets: 77 (normal 150-450)
And then remember that we stopped listing his neutrophils because they were so high that it didn't matter, well they had crashed down to 0.8 (1.8 -7). Chris wasn't allowed to leave the hospital until they were 0.5.
So needless to say we were a little concerned at first.

They retested Chris' blood again today and his white blood cells and platelets were higher than Sunday (3.5 and 85) and we are still waiting to get his neutrophil count, which will have likely risen too.

His doctors weren't 100 per cent sure why his counts were low. The one explanation is Chris had a mild allergic reaction to my paren't dog when we went to visit last weekend, and if he had any inflammation his body could have attacked and caused a drop in his counts. But since they aren't sure and Chris' counts are still low, we did not get to leave the BMT program and will need to wait to transfer to MS clinic.

The main reason we wanted Chris to be transferred to MS clinic is that we are really excited for him to have an MRI, so that we can see if there are any early signs of it working. Chris had an MRI of his head right after of the transplant when they were concerned he might have a brain infection, so we will really be able to see if anything has progressed since the transplant. While Chris has not had any visible relapses, it is nice to have the proof that this procedure was really worth it.

In other news, there have been a couple of exciting announcements in MS research that we thought we would share for those who are interested:

- The first oral MS treatment, Gilenya, has been approved in Canada. While not a cure, this is a disease-modifying drug that has been shown to reduce the relapses by 54 per cent. While Chris is no longer on any treatment plan, this news is really exciting for MS patients that require and respond to disease-modifying treatments as I remember how much Chris hated taking three needles a week.

Chris' doctors are still working on their report on their clinical trial. While Chris will not be included in the report, he did undergo the identical protocol, so we are really interested to see the report (and will be posting it on here!) to see how successful it was for everyone else.

It will also likely get more publicity for this procedure, which I think has gone under the radar. It wasn't until we were desperately searching the Internet that we find out about this procedure and even then, it was not clear that this was an option for Chris. There has been a lot of media coverage on the CCSVI procedure, so it would be great if this procedure became more well known to allow MS patients to understand their options

Tuesday, March 1, 2011

A lot has happend since our last post. Chris had his third IVIG treatment on Sunday and had his blood tested again (White Blood Cells was 5.1!). We also hit a huge milestone on Sunday: 10,000 hits on our blog from over 20 countries!

Today was Chris' monthly check up and it went exceptionally well. As you can see, Chris is still recovering really fast (the last two photos are less than two weeks apart!).

In fact, he was approved to go back to work next week, which is WAY ahead of schedule. His doctor told us that transplant patients usually require three to six months before returning back to work, with most patients taking closer to six months to be ready. However, she really looked impressed when Chris told her that he was working out on the elliptical for an hour each day and lifting weights. She assured us that as long as Chris was feeling up to it, there was no health risk for Chris going back to work this early.

However, while Chris is feeling much better, he did get a little push last week in the form of a letter from SunLife Financial. Chris was denied long-term disability covereage due to a condition we didn't know about in their policy. Chris' work changed their coverage on long-term disability last June. SunLife Financial has a pre-existing condition that once an employee gets long-term disability coverage, they need to have a 13 week period in the first year when they do not require medical treatment.

Well Chris had an appointment to get information about the transplant in July, which was 12 weeks and 4 days before he started the procedure. Even though Chris wasn't "treated" for anything at the time, SunLife Financial includes all physican consultations as treatments and denied Chris coverage. It was definetly a set back, but luckily Chris was close to the point that going back to work was a possibility. In the meantime, Chris is working on writing an "I hate SunLife Financial" song that we can post on YouTube that will surely go viral.

Finally, our last update is about the MS Walk that we are participating in this May. Chris and I, in addition to some of our friends and family members, will be walking 5 km to raise money for the Multiple Sclerosis Society of Canada. The MS Society is responsible for the funding of this MS trial and for other research funding in Canada. Last May, there was no way that Chris could walk 5km due to a severe relapse, and we are really excited that he will be able to participate.

We just wanted to post a link to our fundraising page to anyone that is interested in donating to the MS Society. It would really mean a lot to us if you can donate anything, and it will mean even more to the other 75,000 Canadians with MS.

Thursday, February 17, 2011

Chris was officially two month post-transplant on Sunday (February 13). He has really improved leaps and bounds from our last update. He does 30 minutes of cardio each day and is starting to lift weights again (and much more than 5 lbs now!) He can even keep up with me when I go on shopping trips, which is an accomplishment for any man, bone marrow transplant or not.

We have his next appointment on March 1 and Chris is going to discuss with his doctor about going back to work soon. Originally they had discussed June 2011 as a probable timetable, but at the rate he is going, it is hard to imagine being at home for another three months.

Even though he has made such hugh improvements in his endurance and strength, he is mostly proud about his hair growth. His hair is officially growing back on his head (lot of fine hair!) and for some reason his facial hair, especially his moustache, is growing back thicker than before. He needs to shave it almost every day now! Weird.

In terms of his MS symptoms we are trying to be alert of any signs of relapses or progression and maybe even some signs of improvements. No relapses, no progression. In fact, Chris' last relapse would have been April/May 2010 (he had mitoxantrone in July to try and prevent relapses and progression prior to transplant). I get super excited just thinking about this.

In terms of improvement, we are actually starting to pick up on little things. Prior to the transplant, if Chris used the elliptical, his muscle in his left leg would spasm and shake. Since he has started working out on the elliptical again after the transplant, he hasn't experienced any muscle spasms on his left leg. It may seem really minimal, but it is such a hopeful sign for us.

Monday, January 31, 2011

Chris' progression over the last six months. Top left: Chris looking healthy at the beginning of
August. Top right: Chris not long after his first dose of Cyclophosphamide in October.
Bottom left: Chris one month post-transplant (January 13). Bottom right: Chris at his IVIG
transfusion (January 30).

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Chris went in to have his IVIG yesterday. It was our first time in the Medical Day Care unit since he had his stem cell collection back in October. The IVIG is used to help immune recovery after a bone marrow transplant and can also help prevent infection. We were told that it isn't crucial, but when they started this study on MS patients ten years ago they incorporated IVIG transfusions into the protocol. Since they are trying to keep all of the MS patients on the same treatment plan, Chris will get these transfusions every month for likely the next six months. At the same time we were told that if we need to delay a transfusion because we are going away for a weekend or have important plans, it is not a big deal.

The first transfusion was a breeze for Chris. The only possible side effect was headaches and Chris didn't even get that. His only real complaint is that he is seriously getting sick of needles. Taking into account that Chris was getting two needles every hour for some days while in the hospital, we think that he may been poked over 500 times during this procedure. A consideration for anyone thinking about doing this procedure, be prepared to have a lot of needles.

A lot of the nurses that work in the Medical Day Care unit also work in the unit that Chris was admitted to (5 West). A bunch of the nurses recognized Chris and commented on how much better he was looking (we included some photos that show Chris' progression.) They also relived some of Chris' finer moments. I don't know how much Chris likes being referred to as the patient that had "those weird reactions to the drugs" and having some of the nurses joke about his drug induced escapades. I, however, enjoyed it thoroughly.

Wednesday, January 26, 2011

Chris went in for his doctor's appointment yesterday and he moved from once a week appointment to once a month. He is recovering really well and as long as he remains negative for CMV, he can continue to have monthly appointments and monthly IVIG treatments. Chris' second IVIG treatment will be in February, but we don't have the day yet.

His doctor really emphasized that Chris needed to start doing some cardio. The problem with it being the winter (it was -30 this week) is that it is really unappealing to go outside. I have suggested that shovelling the driveway is great cardio, but I don't think he is buying it.

Chris's white blood cell count was down on Tuesday: 5.4 This is still in the normal range, but not as shockingly high as before.

Platelets: 150, which are now in the normal range. I can now go back to punching him when he says things that make me mad.

Hemoglobin: 118

Chris still has not shown any new signs of his MS. It was around this time last year that we realized how bad Chris' MS was becoming. We had gone skating on the Rideau Canal, Canada's largest outdoor skating rink and Chris for the first time was unable to skate. Chris had played hockey for ten years. He had even taught me how to skate on our first date. But when we went to skate that day he was holding on to me for support. He fell pretty badly a few times and we ended up giving up halfway and taking a cab back to our car. It was after that day that we became obsessed with figuring out a way to stop this from progressing more. It's crazy to think the difference a year can make.

Friday, January 21, 2011

It was also nice getting Chris' results. Chris tested negative for CMV in his last test. He will still need to stay on his anti-virals and continue to be tested once a week for the next few months, but it was a relief to know that it is under control for now.

We also asked about Chris' high white blood cell count. They told us that there was a chance that his high white blood cell count could quite possibly be due to an infection. But as long as Chris continues to not have a fever and is feeling well, we don't need to worry about it. Unless Chris' white blood cell count spikes outside the normal range, we don't need to worry about anything.

It is also possible that Chris just has good bone marrow. He is young and other than his MS really healthy, so maybe he really is just really good at growing stem cells and white blood cells. I guess everyone has a talent.

It's a good thing that Chris is doing better because I am unfortunately back at work on Monday. As terrible as this procedure has been, it has been a nice little honeymoon spending litterally all day every day together (minus a two day break) since we were married. Even though I am working from home, it will be an adjustment for Chris and he is taking suggestions for a new hobby to help pass the time.

Chris got an X-box Kinect for Christmas, and he started doing some "personal training" with it yesterday. He lost a lot of muscle during the procedure. Shirts that use to be really tight around his arms are now really loose. He was only able to do bicep curls and shoulder presses with 5 lbs weights when he was doing 30-35 lbs (40 lbs on his good days) before the treatment. He did a ten minute workout routine and was sore the next day. It was still a huge difference from a few weeks ago when he would get winded going up the stairs.

We are back at the hospital on Tuesday for another check up and blood work and Chris will need to schedule his IVIG. He gets this treamtent once a month (he had it on Day +7) and it helps prevent infection and boost the immune system.

Tuesday, January 18, 2011

Platelets: 100 (150-450 is normal)
We were just hoping for him to be over 50, so that he would start his new antibiotic.

Hemoglobin: 118 (140-180 is normal)

And Chris' WBC is....drum roll, please....8.6

That's insanely high.

Now, we got these results over the phone, so I am not sure if this spike is normal. We have read other people's progress online and no one seemed to have a spike like this. While I am sure that if that number was troublesome, we would be notified about it or be going in to the hospital again, a high white blood cell count usually means an infection. I also learned (thanks to Google) that pregnancy in the final month can also be linked with heightened white blood cells, so this could support my earlier theory that I think Chris is pregnant ( he was getting morning sickness and tired all of the time).

Speaking of infection... we thought we would find out today if Chris had responded well to the new anti-viral he was on and if his CMV levels were down. Well it turns out that while they conducted the test today, we don't learn the results until Friday.
Now we are waiting another three days to find out what the next steps are. This was the bad news.

To help pass the time Chris is having another MRI tonight at 10:00 pm. They wanted to check to make sure that his abscesses healed, and that he doesn't need any further surgery. Chris has been over pain medication for about a week now, so we are really hopeful that he was able to fix himself.

Friday, January 14, 2011

Okay, let's go with the good news first. At Chris' appointment today, we found out the culprit behind Chris' constant night sweats and possibly his bladder problems.

Next, I will give you even better news. It is not a urinary tract infection. His tests came back negative.

But here it comes, the bad news. Chris tested postive for the Cytomegalovirus (CMV). Now, you may remember that I mentioned this virus earlier this week when I attempted to explain that Chris was more susceptible to infection because of his specific stem cell transplant. Well I spent the day learning a whole lot more about it.

So what is CMV? Well chances are at least half of you reading this post have this virus. Approximately 50 to 80 per cent of people have this virus by the time they reach 40. However, it normally presents no symptoms in healthy individuals. You can have it your whole life and never know. It is part of the herpes family, which includes chicken pox, shingles, mono and yes, herpes. Similar to all of these viruses when you contract this virus, you have it for life, but the disease can become dormant. It can be reactivated, and this can happen after a bone marrow transplant. It can also cause problems for people who are immunocompromised.

Chris either had this dormant virus prior to the transplant and it was reactivated after the bone marrow transplant or it is possible that I gave it to him as CMV is commonly spread by kissing. I have yet to rule out that Chris hasn't been secretly kissing other girls with CMV, but I will save this for another blog post.

A CMV infection may attack different parts of the body, such as the lungs, eyes, stomach, kidneys, and possibly the bladder. The common symptoms for CMV are: fatigue, loss of appetite, night sweats, weakness, swollen lymph nodes, muscle aches, and fever. For immunocompromized patients, CMV can attack the specific organs and cause a whole bunch of problems where it is at. This has yet to be determined for Chris.

Right now we don't have to worry too much. Chris tested positive, but his level of the virus is still not serious yet. His level was 630 and the serious level is 1000. I didn't think to ask what a normal or safe level was or what this level was measured in, so I am sorry if these numbers don't really shed that much light. All I know that at this point, Chris is now taking a new, stronger anti-viral ( Valganciclovir ) to try and fight the infection.

There are a few different scenarios that could happen moving forward.

1) My personal favourite: Chris' CMV levels will be down considerably on Tuesday (or next appointment) and we will conclude that Chris' immune system in addition to the new anti-viral drugs will have beat this virus.

2) Chris' levels will be slightly up next Tuesday. This could mean that the level had continued to rise since Chris CMV test this past Tuesday, but had been brought under control by the anti-viral. We will need to continue to have two appointments a week to monitor the virus.

3) Chris' levels will be much higher on Tuesday and possibly close or at the 1000 level. At this point Chris would need to have an intravenous anti-viral administed twice a day for two weeks. We could arrange to have this done at home, but this is obviously not the scenario we are hoping for.
This, of course, was a little unsettling to hear. Chris was a little relieved to find out he had the virus. It can be really frustrating to have symptoms, especially ones that keep you up all night, and not have an explanation. Having an explanation, a virus that has a treatment means that his doctors know why he is having these symptoms and also how to stop them. When you have MS there is always a fear that when you get a symptom that there is a chance that it may never go away. CMV may never go away, but at least it can become dormant and Chris may finally get a good night's sleep.

Thursday, January 13, 2011

Chris will our pill suitcase. We could pretty much open
a pharmacy right now.

﻿

He is doing really well. Much better than we could have imagined one month ago. However, Chris is having a hard time now that his improvements are not are noticeable and aren't as rapid. He still becomes incredibly tired after even walking up the stairs and is still having these strange hot and cold flashes. He is either boiling hot and sweating or freezing cold and shivering.

But he is now completely off his pain killer. An amazing sign since doctors orginally thought that Chris would contiue to be in pain until he had surgery. Now it appears that he won't need to undergo any surgeris.

He is also off anti-nausea medication and is only drinking one Ensure a day (he was drinking about three before).

One of the things that Chris is finding hardest is the house arrest feel of this recovery. If he does leave the house, he needs to avoid areas that have a lot of people. And even if we do the leave the house, he is usually too tired to stay out very long or even go out at all.

In terms of how his MS is right now he is pretty stable. We haven't seen any signs of improvements (completely normal at this point, and we may never see any improvement), and we haven't seen any signs of relapses or progression. It's too bad that there isn't a test you can take that will tell you if you are cured. We do want to continue to update this blog on Chris' MS condition to see how successful this procedure was .For right now we are just focused on Chris' recovery.

Speaking of which, we are back at the hospital again tomorrow, so we will be back with another update on his recovery tomorrow night!

Tuesday, January 11, 2011

We were in at the hospital again this morning. It looks like Chris may have another infection.

Luckily, this time it does not appear to be anything serious. Last night Chris was up all night (and because Chris does not like to be awake alone, I was awake too!) because he was getting pretty intense night sweats and chills. He also felt like he had a full bladder, but didn't have to go the washroom no matter how many times he tried. However, he didn't have a fever and or any scary symptoms such as back pain or trouble breathing. We made it through the night and called the hospital first thing in the morning. Coincidentally, Tuesday is the day Chris would have had to go to hospital if he needed to have two appointments a week (maybe this is a sign). Since today was a "clinic day" for the bone marrow transplant team, Chris was able to get in really quickly today.

The problem du jour? Likely a urinary tract infection. They put Chris on antibiotics for a week. They ran a bunch of tests on him to see if he had a bacterial infection or a viral infection (I didn't even know you could have a viral bladder infection).

We also learned that Chris will need to start coming every Tuesday since he needs to a have a specific blood test done (a CMV) that detects viruses, which not all bone marrow patients require. MS patients that undergo a bone marrow transplant are actually at a higher risk for getting a virus since they only receive specific stem cells (CD34) during their stem cell transplant. You may remember when we talked about the stem cell collection that MS patients normally need twice the amount of stem cells because they are later cleaned to remove the T cells. Okay, I am not the greatest at explaining this because I don't fully understand it. Basically, MS patients are at higher risk for viruses because they don't get all of the stem cells back that regular transplant patients receive.

We did get Chris' blood counts

White blood cells: 3.1 (this was his counts today and last Friday, which means that they remained stable for four days!)

Hemoglobin: 108

Platelets: 36 on Friday and 41 today

They also brought up that Chris may also start another antibiotic (the one that we mentioned in the last post) even though his platelet levels are still not high enough. The risk of him getting another infection is much more important than the risk of lowering his platelets. The reason he is on this specific antibiotic is because even though Chris is not part of the clinic trial, they are keeping all of the MS patients on the same protocol.

Essentially, just when we thought Chris was going to start taking less pills, we had to make another stop at the drug store. However, it was far less traumatic than his last infection, so I will glady make the trip to Shopper's Drug Mart.

Friday, January 7, 2011

Chris' appointment was problem free. He was even doing so well that they switched him to only one appointment per week.

His only issue was that his platelets were still really low. Normally he would be starting an antibiotic that prevents pnemonia, but the drug, Septram can decrease platelet counts.

They decided to hold off and start the drug next week when Chris' platelets are hopefully much higher.

We don't have his other counts back yet, but we were told unless we had something to worry about, they wouldnt' be calling us about them.

At the appointment, Chris' doctor started going over all of the infections that we had to worry about Chris catching, including pnemonia, shingles or meningitis. Sometimes I think they wait for you to start getting cocky about your health, before they mention all of the other things that you can look forward to.

Wednesday, January 5, 2011

I am a little depressed tonight. Not because anything is wrong with Chris, but Canada just lost in the World Hockey Juniors. The first thing we did when Chris got out of the hospital was watch the first game of the tournament. Sorry, I am getting a little nostalgic here (and off-topic).

Today we are actually finding it hard to write a blog post. Aside from the whole depression thing, not a whole lot happened today. We didn't go to the hospital, Chris didn't get any blood tests and he didn't get any transfusions. He didn't even pull any of his stunts when he comes up with some strange symptom that he doesn't mention until the the main hospital office closes for the day.

We defintely took advantage of the day off. Chris even left the house and we went to a few stores with me today. He is finding his fatigue to be getting a lot better and he is becoming a lot more independent. We have been surprised with how fast he seems to be getting better and feeling better.

However, we have decided that we probably start blogging a little less often so that we only post when we have news to share. Chris will have a doctor's appointment on Friday, so unless something major happens tomorrow, we will be taking a day off from blogging too. We will be sure to post on Friday to show how Chris is progressing.

Tuesday, January 4, 2011

Chris became a free man today. He was finally discharged from the hospital and will now only need to visit the clinic.

It's funny how fast things can move now that the holidays are officially over. They had already decided to discharge Chris by the time I had parked the car and came upstairs (okay, I also picked up a coffee on the way.)

Since everyone was back from Christmas break, we got to see a lot of doctors and nurses again that we hadn't seen in a few weeks. Coincidentally, the nurse we had today was the same nurse Chris had on the day of his transplant. She went away for the holidays not long after that and was gone for the entire time that Chris was sick. It crazy the difference a couple of weeks can make.

Dr. Atkins was also back today and stopped by to talk to Chris about the future. After being discharged Chris will start visiting the clinic for the next year and they will help arrange for his vaccinations when it is time. After he is done visiting the clinic, he will have another appointment with Dr. Atkins and with the MS clinic at the hospital. They will then continue to do MRIs on Chris to monitor his progress, approximately every 6 months. Dr. Atkins said that it was just like any other patient that has a bone marrow transplant. They follow them for the rest of their life to make sure that their disease does not come back. Until more is known about the long term success of this treatment, it is really important to monitor Chris' recovery in the long term.

The other big decision was the removal of Chris' PICC line. As soon as they brought this up, Chris was pretty much convincing them that it was a good idea to take it out. After having a better blood pressure and Chris promised to continue to drink lots of liquids, the doctors agreed with Chris and they removed the line. The big advantage? Chris used to have to saran wrap his arm, wear a towel and arm bag on his arm every time he had a shower to prevent his PICC from getting wet.

While Chris' blood pressure was better, they decided that he needed to have a platelet transfusion. His counts were 19, which aren't horrible, but they did go down again and they wanted to boost him up before he went to the clinic.

Chris had received platelets before when he was in the hospital; however we weren't sure if he would have a reaction. Each time he had the platelet transfusion he was already sick and had a fever, so it was hard to notice any new symptoms. It turns out Chris does get a reaction from platelets. Nothing major. He temperature just a rose a bit (no fever) and he started feeling cold and shaking. His nurse just paused the transfusion and injected him Benadryl and gave him some Tylenol to stop the reaction. I am convinced Chris just wanted to scare me before he got discharged.

Monday, January 3, 2011

I am now convinced that Chris will never be discharged. Another day at the hosptial today and they decided that they still want Chris coming in daily.
He was feeling much better this morning, kept his breakfast down (although it was only an Ensure) and despite feeling tired, he had no complaints.

On a side note: I am also convinced that Chris is pregnant. His three biggest complaints: morning sickness, extreme fatigue and just feeling uncomfortable all the time.

However, they still pumped Chris full of hydration and booked another appointment for tomorrow. The decision was in part due to the fact that Chris will need home care for the first little while, and since it was a statuatory holiday today, their office was not open.

Another side note: For anyone considering this procedure, if you have the option to not do this during Christmas break. Aside from the obvious issues (no turkey, no family and no Santa in the hospital), there is a lot of staff changes over holidays and some services, such as home care are closed, which can slow down the transition process.

The home care service will take care of Chris' PICC line, which will remain in for the next little while and give him hydration until his doctor is satisfied that he is drinking enough and keeping everything down.

Chris' counts were doing well today:

White Bloode Cell: 2.9

Platelets: 23 This is the first time they have gone up naturally (i.e. not after he received a platelet transfusion)

Hemoglobin: 104

Neutrophils: 1.6

When we first left the hospital, we met with the team's social worker to talk about how Chris would be doing over the next few months. She mentioned that it would likely be hard to see daily improvement, and that it would be probably be weekly improvement. However, we have been noticing some pretty big differences in Chris each day. He was much more awake and alert today. While he still gets winded going up our stairs, he is now awake for a good part of the day. We also keep seeing nurses that took care of Chris as recent as a week ago, and they all seemed impressed with his improvement.

And while we have been bragging on this blog that Chris did not lose all of his hair on his head, we realized today when we were trying to put our finger on why Chris still looks really sick, that Chris' eyebrows and eyelashes have thinned signifcantly. He also shaved when he came home from the hospital over a week ago and he has yet to grow any stuble.

Sunday, January 2, 2011

Today we hoped that Chris would be discharged, but unfortunately we will back at the hospital for at least another day.

Chris had a low blood pressure, so they needed to pump him full of liquids this morning. It made sense because he was getting really dizzy whenever he stood up. Some of his other counts seemed low, including his potassium, so his doctor wanted Chris to come in tomorrow.

They were not overly concerned with this new development. Chris was so tired yesterday that the only real meal he had was dinner. He didn't get out of bed until after lunch and all he wanted then was ice cream. He napped until dinner time and then went to bed after that. He also was not able to keep his breakfast down this morning, so they just told us told us to make sure that Chris was eating and especially drinking a lot. Even if this meant waking Chris up just so that he could eat and hydrate.

I, of course, took this personally and spent my day making sure Chris was drinking and made another run to the grocery store to stock up on a variety of liquids. I felt a little bad waking him up to eat and drink (but only a little).

Chris' other counts were doing better.

White bloods cells were up: 2.8

Platelets were stable after falling for days: 19

Hemoglobin was only slightly lower: 108

And we didn't get his neutrophils today.

The other good news is that Chris didn't feel as tired today. He was able to stay up to watch the entire World Juniors game when Canada beat Switzerland. And while he had a few naps throughout the day, he was able to stay up to 11:00 pm ( a new high).

Saturday, January 1, 2011

Not surprisingly Chris spent the majority of the day sleeping. He really wanted to stay up to watch the Leafs-Senators hockey game and the Winter Classic, but could not make it to the third period.

We mentioned yesterday that we wanted to reflect a little bit on the procedure. One of Chris' nurses asked him not long ago if this whole transplant was worth it. He responded very confidently, "Oh yah, definitely." If this procedure is able to stop Chris' MS progression, and possibly reverse some of his symptoms, it was worth the terrible month he has had.

However, we both admitted that this procedure was far worse that we had imagined. Chris joked early on this would be a "walk in the park." It was far from that. It really is the worst month either of us have ever experienced. While Chris had to go through it all, he doesn't remember much. I remember everything, but have no idea what it was like for him.

We skimmed over a lot of the really horrible parts of the procedure in this blog. The main reason for this being that we did not think it would be fair for our close friends and family members to read such painful accounts of Chris' life online. We didn't want anyone to panic or be scared for Chris. Also, since Chris was not exactly "with it" during this procedure, I did not think it was really fair for me to disclose information that he might not like being made public.

Chris was in a lot of pain due to the infection that he had early on. His doctors actually think he may have had it before the actual transplant while he was having chemotherapy. The pain was so bad that he was on a lot of pain killers, which included morphine. Chris ended up having a terrible reaction to the morphine that actually made him delusional and at some points a little violent. Even when he was taken off the morphine, he was so heavily drugged that he became completely reliant on his nurses and me to help him do anything. He couldn't even get himself out of bed and sometimes was not sure where he was.

It was a little bit ironic at the time. Chris became completely helpless and dependent on others. But the reason we were doing this procedure was to stop his MS and prevent this from happening.

However, not all of the delusions were upsetting. He was often entertaining and on more than a few occasions he had me and the nurses in hysterics with his different antics. I remember on one occasion looking up at him while I was lying on my cot and saw that he was eating something off his stomach. I was worried that he was eating something that had fallen on his bed, but he told me not to worry, "I am just eating cheese." Sure enough he continued to eat imaginary cheese for a few minutes and then fell asleep. But when his cheese omelette arrived at lunch later on, he said he couldn't eat because he wasn't really craving cheese anymore.

For anyone that is considering this procedure, we just wanted to be clear that while we think it is worth it, it is extremely hard.
It is definitely not a "walk in the park", but it sure beats the alternative. If everything has worked according to Chris' doctors’ plan, Chris will just have to worry about getting better and not have to be concerned about getting worse.